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Keep the Change is a
refreshing romantic comedy that has authentic autistic representation with
neuro-atypical actors showcasing their talent to create an impactful film that
resonates with everyone. The picture embraces its unique characters and
portrays them dealing with issues prevalent to all: love and self-acceptance.

In honor of National Autism
Awareness Month, I would like to review Keep the Change, a movie featuring
actors in a way no other movie has done before. Usually, neuro-typical actors are
applauded for playing the few neuro-atypical roles available. Sean Penn was
nominated for an Oscar for his portrayal of an intellectually disabled father
in I Am Sam. However, the protagonists and supporting characters in Keep
the Change are played by actors who are on the autism spectrum.

This love story takes place in
the Manhattan JCC’s program, ‘Connections,’ for young adults with developmental
and learning disabilities. The film centers around David Cohen, a wealthy
aspiring filmmaker who is mandated to attend the young adult program after a
confrontation with a police officer. He falls in love with the beautiful and
vivacious Sarah Silverstein and tries to convince her that they are both better
than their ‘Connections’ peers.

While Keep the Change is
most certainly a touching romantic comedy, it also showcases David’s journey
toward self-realization. Throughout the movie he considers the other autistic
adults in ‘Connections’ ‘abnormal.’ His parents perpetuate his rationale,
believing that his participation in the program is a blip in his summer plans.
When they learn about Sarah, they worry that David will end up with someone he
will have to take care of rather than dating someone who can care for him. He
later admits that he is ‘weird’ and different, and he likes Sarah because she is
‘weird’ and different too.

Autism is a complex developmental
disorder that affects a person’s ability to communicate and interact with
others. About
1 in 59 children
in the US have been identified with an autism spectrum disorder in all racial,
ethnic and socioeconomic groups. While there are no clear-cut biological
markers of autism, many studies suggest that genes and environmental influences
act together to affect development that can lead to autism spectrum disorder. Fragile
X syndrome, passed from unaffected mothers to their male children, is the most commonly known genetic cause of autism
and other intellectual disabilities. In some cases, autism may run in the
family; however, even if a family has identical twins, there is still a chance
that one twin will have autism while the other will not.

My hope is that National Autism Awareness
Month inspires people to learn more about autism spectrum disorder. While there
is nothing uniquely Jewish about autism, we must identify the barriers
individuals with disabilities and their families face within the Jewish
community and around the world. This April, may we seek out ways to foster a
more inclusive community this month and every day.

As genetic tests allow us to know more about our
makeup than ever before, sorting out just how much information we want about
ourselves and our families can feel complicated – and perhaps nowhere is the
question more pertinent than when having a baby.

What do we want to know about a child’s risk of
disease? Most of us would agree that we would avoid passing on a fatal childhood
illness, such as Tay-Sachs, if we could. What about disorders that are serious
but not life-threatening? The answer of course will vary person by person. But
where people are in the family planning process can also make a difference.
Seeking out information as early as possible – ideally prior to conception – can
help parents-to-be feel empowered rather than anxious.

A
recent NPR story shared one couple’s experience with
expanded carrier screening during pregnancy to explore whether more information
is helpful or harmful. Test results indicated their baby could inherit spinal
muscular atrophy, leaving them worried and in search of a genetic counselor. Their
daughter was ultimately born healthy, but the experience was an added stressor.
Fortunately, there are ways to improve the screening experience and reduce the
likelihood of finding yourself in a similar situation.

First, consider preconception carrier screening. This allows you to talk about risk
and make an informed decision while it’s still hypothetical. Most
families will receive information that helps them worry less (97% of babies
born healthy, as the NPR article points out). For couples who learn they carry
the same recessive disorder, preconception screening provides more options for
having a healthy baby. Even those who don’t choose to alter their approach to
family planning can benefit from this knowledge by preparing for early intervention.

Second, ensure you have access to expertise. Consider
screening through a doctor’s office or community program – such as the one
offered by the Norton & Elaine Sarnoff Center for Jewish Genetics – that
includes genetic counseling as part of the pre- and post-screening process.
Before the test, education can help you understand what the test screens for
and the potential outcomes. Afterward, receiving results from a genetic
counselor or doctor with expertise in genetics ensures a thorough explanation
and an opportunity to ask questions.

Genetic counselors can also help you understand risk,
which often poses a challenge. Beyond understanding numbers and statistics,
it’s hard to take our feelings out of the equation and focus on facts with something
that feels so personal, like our health and the health of families. Genetic
counselors are trained in both medical genetics and counseling to empower you
with information and provide emotional support.

The journey to become a parent is exciting – and also
filled with many unknowns. Take away one by getting screened earlier and with
guidance from a genetic counselor.

John Snow created this map showcasing all the cholera cases near the Broad Street water pump.

By Becca Bakal, MPH

This National Public Health Week, I’m thinking about what
working in public health means to me. At its most basic level, public health is
about looking at health from the level of a population, instead of focusing on
an individual.

I like to think of it as working upstream, where clinical
healthcare is downstream. Public health is about preventing problems, more than
fixing them (although that’s part of it too).

Most people would trace the field of public health to 1854,
when John Snow identified and shut off a contaminated water supply that had
caused a cholera outbreak in London.

Snow mapped all the cases of cholera in the outbreak and
found out that they all had something in common: they were near one water pump.
He had the handle taken off the pump, and the cholera outbreak ended.

Snow took a birds-eye view of a health issue that was
impacting a group of people -- in this case a neighborhood. Because he zoomed
out and literally focused upstream, he was able to identify the cause of the
issue and intervene to prevent more people from falling ill.

This is similar to our work at the Norton & Elaine
Sarnoff Center for Jewish Genetics. We strive to help families who are at risk
of certain genetic health conditions by reaching them early, when they can address
that risk and prevent illness. In our work, focusing upstream means:

First and foremost, educating individuals of
Jewish ancestry and professionals who care for those individuals – such as
rabbis and doctors – about how ancestry is linked to genetic risks.

Facilitating access to carrier screening for
folks who are starting their families, to help one generation learn about the
risk it can pass on to the next. Screening is a classic example of a public
health initiative: it helps to identify potential health problems early, in
this case by looking at one generation to determine the risk to the next
generation.

Encouraging families to look at past health
history for clues about future health risks.

Linking families to a genetic counselor and additional
resources if they want to learn more about, or pursue, other types of genetic
testing and screening—for example, testing for BRCA gene mutations that increase risk for certain types of cancer.

Although in many ways public health principles and
techniques have evolved since the time of John Snow, in other ways they have
stayed the same. We still prevent illness by working upstream.

I feel lucky to be part of a tradition of folks improving
the health of the public, and part of a community of innovators building new
and improved techniques to meet the demands of the future. Happy National
Public Health Week!

In part one of this
series, you learned about BRCA genes and why someone with a family history of
cancer, like myself, may or may not choose to get tested. In part two, you
learned about possible results of a BRCA genetic test. In the third and final
installment of this series, I explore what BRCA testing meant for me.

Many genetic mutations are inherited from your biological
parents. Finding out that a family member, like your mom, has cancer can be
devastating and it may take time to decide whether it is right for you to go
through testing. Being tested allows you to work with your doctor or genetic
counselor to create a personalized plan that allows for early detection and
care. It gives you the option of making changes in your life now to help
prevent cancer in the future if you find you have a higher risk. However, you
can also make proactive changes without choosing to test.

The long(er) answer is, if you are thinking about testing,
take your time and do your research. Advocate for yourself. Speak to a genetic
counselor to help assess your risk, your options, and
to better understand the process. The decision to be tested can be emotional
with many of the “what ifs.” When being tested, I began to fill with
questions about the risks of genetic testing, like:

What would my life
look like if I test positive for a cancer gene?

Would I have to have
my ovaries, uterus, or breasts removed? When?

If I have these
surgeries, what will that mean for my body image?

Can I have children?
Will they get this gene?

I had all these questions, and more, when I was tested. I
kept envisioning future conversations with partners, friends and family should I
find out that I have the gene. I asked my doctor what impact this test would
have on my physical health, but also my sexual and mental health. She reassured
me that it was in my own hands, and regardless of what the results said, I
would have support and options for what to do next. If the results came back
positive for the genetic mutation, I would have the option to wait until I was
older to consider some preventative measures.

Preventive measures such as breast, uterus and ovary removal
can affect your body image and sex life. These are your sex organs—of course,
sex will look different without them! A WomanLab blogger once told us that, “the peace of mind regarding
my healthy future far outweighs the persistent body image issues that accompany
waking up in a new body that looks and feels very unnatural.”

When considering genetic testing and preventive treatments, it
is important that women have information about what changes these
health-preserving treatments might cause and
the ways in which negative side effects can be treated.

Ok, I thought, I am ready for whatever comes my way. But
here’s the thing… I don’t think I was. I wasn’t prepared for my heart beating
out of my chest when I went back in to get my results, but I also wasn’t
prepared for the wave of relief that washed over me when I learned I didn’t
have the gene mutation.

As it turns out, I did not feel equipped for the possibility
to learn that I did have the gene. What would I tell my mom? My sister? Would I
pass the gene mutation onto my future kids? Will I even have kids? Luckily, my
results came back with no indication of BRCA gene mutations so I did not have
to have all these questions answered. It was a relief, but also only a small
aspect of the many factors that build up and determine whether I will have
cancer in the future.

Ok, so you’ve done
your research and maybe I’ve piqued your interest. If you feel ready, talk to
your doctor and a genetic counselor about if genetic testing is right for you.

Not sure where to get started? The Sarnoff Center offers access to a
genetic counselor who can answer questions, provide guidance, and help each
individual identify an appropriate clinical resource if needed. Contact us at
(312) 357-4718 or GeneticScreening@juf.org for
more information.

Anna Kheyfets is a
senior at the University of Chicago. She will be graduating March 2019 with a
degree in Anthropology and Biology. She is an avid reader, writer, New Yorker,
and proponent of women’s health and rights. She has been an intern at WomanLab
(www.womanlab.org) in the Lindau Lab at the University of Chicago since January 2018,
where she has contributed to blog content, analytics and the other research
efforts. What’s next? After graduation she will be continuing her research in
Women’s Health back in NYC during her gap year before she begins medical school
and is looking forward to some lengthy subway rides.

What is the most valuable gift you can give to your family? The gift of good health! There are many health conditions that run in families. Knowing your family health history can alert you to the potential risk for a variety of
genetic disorders
. Talk to your relatives for warning signs and
assess your risk
for hereditary cancers.

Did you know: Ashkenazi Jews are 10 TIMES more likely to have BRCA mutations, which significantly increases lifetime risks for hereditary cancers, so what does this heightened risk mean for you?
Click here to learn more
.